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| Most of our motley crew mostly smiling. |
This is our family's journey with the rare PIGN genetic disorder Multiple Congenital Anomalies-Hypotonia-Seizures Syndrome 1. When our son was diagnosed in November 2015, we were told he was the 15th documented case in the world. We've discovered more affected individuals since, but it's still an extremely rare and unknown condition since its discovery in 2011. Our hope is to create awareness of the disorder and foster a sense of community among those affected by the disorder.
Wednesday, November 30, 2022
Well-Deserved Recognition
Wednesday, October 26, 2022
School Blessings
We are so fortunate to have Teddy’s 4th grade teacher be Ms. Ellingson. You see, Ms. Ellingson is our beloved childcare provider, otherwise known as Siggy.
She was Teddy’s paraprofessional in the 2019-2020 school year while she was in college. Her college scheduled didn’t align with the paraprofessional schedule, so she switched to subbing only that spring semester. At that time, she asked if we could use childcare occasionally, and I immediately jumped at that offer before she even finished her sentence.
And then COVID happened, and she became our saving grace to get us through the rest of that virtual school year. She became truly part of the family when we saw her and not our own families. She celebrated that first COVID Thanksgiving with us, has lived with us in between her apartments and is very much family now.
Although Teddy struggles with boundaries with her at school, realistically he struggles with boundaries with everyone at school. It’s worth it, though, to get the extra insight into his school days. His regular teacher does an incredible job communicating and sending notes daily, but there’s only so much you can share in a quick note for every child. Siggy can share with us what happens in Ms. Ellingson’s class, the ways Teddy interacts with his peers, how they accept him and interact with him and his successes (and struggles).
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| Evidence of boundary issues at home with Siggy. |
For example, we know that when Teddy is in his 4th grade classroom for science lessons, he may start at his desk with his paraprofessional. But when he gets squirrely, he walks around the classroom with Ms. Ellingson checking out the other students’ projects with her. I think that he gets so many more opportunities to interact with the support of his paras and the tolerance of Ms. Ellingson who knows what to expect from him and his peers when they join her classroom.
We’re dang
lucky. Actually, we’re blessed beyond measure in this regard.
Sunday, April 10, 2022
Blurred Lines
Thursday, March 31, 2022
Our Vacation In Pictures
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| That scrunchy nose gets me every time. |
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| Teddy loved the game room at our rental place. We all did. |
We spent the majority of our time at New River Gorge National Park, as we hadn't explored it yet. It was a great place to spend time outdoors exploring, and the weather was beautifully cooperative for this part of the trip. The river is the center of the park, and this was the day we were checking out the falls and rapids on the river.
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| Aren't we all so cute? |
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| Notice the semi-matching cameras for Dave and AJ. |
We gave AJ our old digital SLR camera on this vacation. We had talked about selling it because we don't use it, and instead we decided it would be a great opportunity for AJ. He absolutely loved it and commented that now he really was like Ansel Adams, his namesake. It also motivated him while hiking and exploring. Teddy, meanwhile, was motivated by adventure. The rougher the trail, the more fun.
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| I'm sure his chair was meant for this terrain ... |
I mentioned a few adaptations. The single best thing we did on this vacation was bring along reinforcements! Our wonderful childcare provider loves to travel and explore, and she was willing to tag along with us. She gets along fantastically with all of us and fits right into the family. I think she might need to join us for every vacation, especially considering she got Teddy asleep both nights in hotel rooms. Magic, I tell you, pure magic.
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| AJ loved being able to go off exploring with Bri. |
On our first day of driving, I mentioned that it was both a good and bad thing that I packed the backpack carrier for Teddy. I said it's a bad thing because I might use it, but it's a good thing because we have it if we need it. Well, we did need it. Teddy can hike remarkably well when he wants to, but he didn't want to finish a particular hike. In fact, all he wanted to do was run in the opposite direction, when there was a really tall cliff about 20 feet away. I carried him for less than a half mile, but it made the hike so much more enjoyable rather than trying to convince a child laying on the ground to move in the right direction.
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| One day he will be big enough to carry me. Hopefully he listens by then. |
We were fortunate enough to have hot tubs at our rentals. The boys did an afternoon dip, so that Teddy got to enjoy the experience. Otherwise, we usually hot tubbed while Teddy was going down for the night.
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| Teddy was excited to enjoy the hot tub. |
All of our kids, including our childcare provider, did the Junior Ranger program to earn their badges. Well, we did Teddy's booklets at most parks. AJ was really happy to add 6 badges to his collection, including 5 brand new locations.
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| This was the most official swearing in ceremony in front of the backdrop. |
After a few days of nice weather, we transitioned to much cooler and rainier weather. It felt appropriate for Fort Necessity, where they were in rain-filled trenches fighting all day. It also felt appropriate for the somber tone of remembrance at Flight 93 Memorial.
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| This is my favorite picture of Teddy from the trip. |
One of the most amazing parts of our trip was being able to connect with not one, but two, other families with CDG-PIGN. We had previously met one of the children 3 years ago when Teddy did his week-long study at National Institutes of Health in Maryland. It's amazing how much both of them have progressed in just 3 years! And then the next day we got to meet a nearly 2-year-old sweetheart, who took us down memory lane to when Teddy was that little.
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| Teddy spent Gettysburg pushing Alexa around, when we didn't put him in his own chair. |
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| This is Teddy giving his version of a hug to sweet Hayden. |
I felt better sneaking away for a couple runs because Dave had an extra set of hands to help. It's a good thing because the chairs we brought for Teddy weren't always meant for all the terrain, so Bri carried Teddy's chair up and down the stone steps on this path, but they got to explore a cool trail while I ran through Cuyahoga Valley National Park.
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| Everyone is happy, even me as I was dying running hilly trails. |
Friday, October 15, 2021
Not Normal Works for Us
For the past 2.5 months, we've had one of our childcare providers living with us. Her lease ended before she landed her teaching job, and she's been on a wait list for an apartment. Since school started, our other childcare provider has been living with us as well during the week. (She has an hour commute, so she stays through the week rather than driving each day.)
Honestly, it is so much easier to have extra hands around the house. Although they don't spend every waking moment with us (and those waking moments probably happen earlier than they'd like living in the basement with Teddy thumping around upstairs), it's so nice to have an extra set of hands to redirect Teddy at mealtime or to keep him from snatching fresh pain au chocolats when I pull them out of the oven. AJ loves having another person to play games with in the evening, and they both spent virtual time entertaining AJ when he was quarantining while his test results were pending last week.
Also, given that our social circle is so small with COVID, it's nice to have another person to go for a walk or run or bike ride. Or, since I'll never have daughters, I can even talk them into going to craft stores with me sometimes.
I know it's a unique living arrangement. It's a little odd that our one "daughter" is a teacher at Teddy's school, and the entire staff knows she's living with Teddy's family. But honestly, it works for us, and it works for them.
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| This kept Teddy out of the pain au chocolat while they cooled. |
I think we're all going to have a bit of withdrawal when our beloved houseguests move out. We've talked about gradually weaning ourselves, still with some family dinners or treats dropped at school. As much as they might miss the meals and tasty treats (perk of living in a cottage kitchen bakery), we're all going to miss each other's company. We'll start the adjustment period this weekend when one moves out to her new temporary place ...
Tuesday, March 23, 2021
Pants are Pointless
Weeks like this make me appreciate our childcare providers more than ever. I always appreciate them and try to tell them how much we love them and couldn't manage without them. But weeks that we're juggling childcare and work drive home that point. This is one of those weeks.
For example, I went downstairs to grab lunch today. In the living room, along with a wide selection of toys, I also saw a broom, a dustpan and an oven mitt. I found my husband in the garage, trying to free Teddy from his entanglement in his running chair with his leg trapped. I assisted with that and commented to Dave that he looked like he was facing a firing squad. His reply was that at least a firing squad would put him out of his misery.
I can relate. Yesterday afternoon I spent the better part of my afternoon trying to get Teddy to wear pants. Teddy can independently put on his pants, but he has to be motivated. Otherwise, we assist him in dressing. It's not a big deal, except when he's actively resisting. Then, the child remains unclothed. I didn't fight him for the first hour, simply ignored him as he sat pantless on top of the dining room table while AJ worked on his school work. I joked to AJ that in traditional school, at least he doesn't have pantless classmates sitting on top of tables.
However, when Teddy was miserable in the house, wanting to apparently do nothing except cause trouble or whine, I tried to get him ready to go outside. I'm pretty relaxed in my parenting style (as is evidenced by the pantless kid on the table referenced above), but pants are required for going outside.
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| Look at those angry eyebrows. |
I asked Teddy to put on his pants. I tried to assist him, to no avail. I used his talker to model how to use it to say, "You need pants." That didn't entice him to come by me, which normally he's so excited to use it that he cooperates until he gets his hands on the device. He chewed on his pants. He whimpered. He moaned. He cried. But eventually he put on pants.
Have I mentioned how much I appreciate our sitters?
Friday, February 12, 2021
Birthday & See Ya Later Celebration
This week we celebrated Ms. Sigrid's birthday, about a week or so early. She's been helping us out after school while she's teaching, but our new sitter started yesterday. Since we're not desperate for help, we are swapping risk by adding our new sitter to our circle and (temporarily) removing Ms. Sigrid. So, we wanted to celebrate her birthday and have an excuse to make a delicious dinner for her before she left.
We made green bean casserole, steak (because that's a treat particularly when you're in college), French fries and French onion soup stuffed shells. She bought into my idea for a cookie dough birthday cake to expand upon her request for chocolate cake.
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| It's not a birthday without cake and singing! |
We managed to celebrate with both of our sitters that evening because Ms. Sigrid picked a night that Ms. Bri is at our house because they enjoy sharing "war stories" of our children. I don't blame them. Teddy gets so excited when both of them are here together that he often can't figure out who to boss around.
We enjoyed delicious food, if I say so myself, showed her the picture preview of her present that is still coming in the mail, gave her homemade cards, and Teddy even showed her a perfectly executed ballerina move. She's been working hard to teach him a new dance move that involves putting his hands on his head and spinning in a circle, but she's yet to see him fully execute it without her physically assisting him. He was being a ballerina during the halftime show, so she finally got to witness him complete the move with only verbal encouragement.
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| Notice how she's carrying Teddy on her back. |
I love that we have such amazing people who are truly an extension of our family. Dave's birthday is next week, and I already told him the bar is much lower for his celebration. We'll miss Ms. Sigrid the next couple months, but we're already excited to see her again this summer when she comes back after student teaching!
Wednesday, December 23, 2020
Sitters and Semantics
I struggle to find the right word to define our childcare providers. I tend to lean toward childcare provider to give more credibility and professionalism to what they do, but sitter is a lot shorter. With the amount of time they spend in our home, nanny is also an appropriate word. The reality is they are an extension of our family.
We've been blessed with a number of amazing caregivers for our children in years past (Ms. Jenny, Miss Kaitlyn and Miss Melanie), but our reliance on and appreciation for our current two is at another level. Some of that may be the result of the pandemic and the need for tighter circles, but Miss Sigrid and Miss Bri are both incredible young ladies.
They take our crazy chaos and roll with it. They know that sometimes I'm more excited to see them when they arrive than the boys are because they ease our stress. We know the boys are completely cared for and in good hands, despite that occasional text that Teddy swallowed a nerf gun tip or fell down the stairs. (That happens with us, too!) They have done countless library or school pickups to save us trips and time out of our work days.
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| We joke that Sigrid is our oldest child, so she joined family photos. |
They spend countless hours playing imaginary with AJ and working through his moments of frustration when things don't go as planned. (That boy takes after me in that regard, and unfortunately life doesn't go as planned.) They encourage his creativity, help him with his handwriting and engage him in physical activity while making it fun (Wiii sports or games chasing around the house).
They shuttle Teddy to every appointment and actively work with him through therapy sessions and then report back to us what to work on at home. They even update his "school" list with new things to work on. They are his primary teachers this year, working on all his academic skills at home through the course of their play and some intentional school work time. They give Teddy his medications and both know how to respond should he have a seizure.
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| This was in 2019 when Ms. Bri made a Packers bike ride possible. |
With the weirdness of COVID, they've shared countless meals with our family and spent nights in our spare room to assist the next day (or to avoid their roommates in quarantine). We all enjoy each other's company during the meals, and another set of hands minimizes the risk of Teddy running off with a knife or something else dangerous or messy. They walk the line between playing with the boys and serving as an outlet for adult conversation for us.
The sound of Ms. Bri's laughter always makes me smile because I know how much fun they're having. Ms. Sigrid has hauled Teddy on bike rides throughout the summer, with AJ pedaling along side her. They've done nature walks, hikes and road trips. They've joined us for holidays and family photos.
They have made the pandemic better in so many ways, in all our interactions, their creativity, their safety awareness and their positive attitudes. They have made the pandemic possible by working the hours they do to allow us to continue working.
When we count our blessings, Ms. Bri and Ms. Sigrid are near the top. For Christmas, Ms. Sigrid gifted us with a photo of her and the boys, so we don't forget her while she's gone student teaching ... as if that's possible. These ladies will forever be welcome in our home.
Monday, August 17, 2020
We Won the Lottery 4 Times!
It's the time of the year where my stress levels naturally rise, wondering about the school year and what will happen. This year defies all odds, as we're looking for full-time in-home childcare who will take COVID seriously and follow precautions outside of work to keep our family safe. And that childcare provider is also filling in as the virtual learning supporter of a 3rd grader on top of whatever Teddy's education looks like. Right now, Teddy's schedule includes traveling to Appleton or Neenah for therapy 4 times a week. So this childcare provider needs to be an educator, therapist, chauffeur, entertainer and childcare provider for a non-verbal child who never stops and rarely listens. Sounds simple enough, right?
Actually, it sounds like an incredibly impossible order ... but I have faith. As I look back at the last 5 years, we have been blessed with absolutely incredible childcare providers.
The first of our in-home childcare providers was a nursing student, Miss Katelyn. Miss Katelyn was fun, great with both boys, reliable, dependable and made our lives so much easier. We discovered that nursing students were a great match for Teddy's diagnosis, as the fear of seizures that got him kicked out of one in-home daycare, was not a concern for them. (And, thankfully, we've never needed that skill set when he's been in their care.)
Miss Katelyn was so amazing that when she could no longer work all the hours, we were concerned that she left too big of shoes to fill. But she referred her friend, who quickly became Miss Melanie to our family. Like Miss Katelyn, she was reliable, dependable, fun and a great fit for our family. She ran a slightly tighter ship, leaving our house as clean as it started every time, which is no easy feat with Teddy. She also diagnosed our boys successfully with impetigo, when we thought they just had a rash that would go away. Whoops! Unfortunately for us, both Miss Katelyn and Miss Melanie graduated and moved along to become real nurses. I'll remain forever grateful that after our ICU stay Miss Melanie was willing to come work with Teddy again for a day when we needed her.
We had someone for just a couple weeks, who didn't work out well at all, before we landed on another friend referral from Miss Melanie. Her friend was pursuing a degree in human services but had her CNA license. That was the start of our time with Miss Bri, which thankfully hasn't ended and has just had a few breaks. Miss Bri took the bar and raised it even higher. She took the kids on so many adventures, heading to her family's lake house, inviting us to her graduation dinner, journeying to Bay Beach and taking the boys to the water park as she'd recruit friends to help her watch AJ. She spoiled our kids, not by giving them things, but by giving them great experiences and so much fun. We convinced her to stay on after she graduated for the summer and then miraculously convinced her to come back for another summer after that. Although she's looking for full-time work in human services now, she still does respite for us and is going to help us out temporarily as we start the school year.
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| If you have human service job leads, I know someone pretty awesome. |
We transitioned to an agency for childcare during the school year, which worked out well for the first year but became a struggle with staffing last school year. They actually gave us notice right before Christmas, which meant we were looking for another agency this past spring. We found one, used them for 2 weeks, and then COVID happened. That meant we needed in-home care and needed it quickly. Fortunately one of Teddy's paraprofessionals had mentioned her school schedule didn't work for her to continue in his classroom but that she'd love to still see him. I offered her the chance to do respite, which with COVID evolved into childcare multiple days a week, which then became full-time summer employment. Miss Sigrid helped us through that rough transition to at-home learning and had as much success with Teddy as anyone would, especially with her background from working with him at school.
Miss Sigrid has truly become a part of our family, especially with COVID. She took the virus as seriously as us, so we had no concerns that she would put us at risk. (Seriously, I think once she made it 5 weeks without grocery shopping!) We couldn't go out to eat, so we'd invite her to stay occasionally for dinner, which made it more fun for us and saved her on that grocery bill. She's been limited in the fun things she can do with the boys, but that doesn't stop her from making every day as fun as it can be. She's willing to pull Teddy along for bike rides, take the boys on walks to explore and has kept the peace during the times they drive each other crazy. When your circle of human interaction without a mask is as limited as ours, it's amazing how quickly she becomes a part of our family.
So why do I know things will work out for the fall? It helps that we have Miss Sigrid helping as much as her school schedule will allow, which covers at least 16 hours a week. It also helps that Miss Bri will help out at least temporarily another 16 hours a week. That only leaves us with two mornings to juggle, which we'll figure out. But I also know things will work out because there's no way we're so darn lucky to win the lottery with our childcare four times in a row. God entrusted Teddy (and AJ) in our care, and he's been faithful thus far. He will provide for our childcare needs ... we just need to put forth the effort.
Thursday, July 19, 2018
Our Kids Really Miss Us While We're Working
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| I love his smoosh faces! |
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| No idea why he's wearing underwear. Weirdo. |
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| Captain Teddy in his happy place, "driving" a vehicle. |
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| Toothless AJ. |
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| One of my favorites. Bri always has a nice smile. AJ, not so much. |
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| I love this picture. Such happiness. |
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| This sums up my kids pretty darn well. |
Friday, September 22, 2017
We Have The Best Sitters
The first was in response to me sending a thank you text to our newest sitter. On her third day with us, she searched under our cabinets to find our cleaning supplies and scrubbed our kitchen sink. Without being asked. When I thanked her, her reply text was, "Of course! If there's anything you want me to clean just let me know! Or write a list because I'm more than willing to. :-)"
She's pure gold. She's not allowed to graduate next May.
The next series came from the sitter who was watching Teddy at the moment. He had woken up at 4:45 a.m. and was pretty tired, so she tried twice to put him down for a nap. She said it was mostly quiet, so she thought he was at least resting. I checked the camera in his room and discovered him playing with a frog in his closet and sent her the picture. She said she counted that as a win for the morning (I would, too!) and followed it up with this:
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| I think play time with Mr. Frog made everything better. |
This is someone who graduated and works full time as a nurse, yet still watches the boys on some of her days off. I'm so glad she's willing and able to continue that relationship with the boys and will take it as long as we can.
The third text came from Teddy's first (and AJ's second sitter) in Green Bay. We had mailed her pictures of the boys, and she thanked me for the pictures and said how much she misses them. This is the sitter who we'd still be using if we hadn't moved to Oshkosh, but she's helped us out many times and will text me to see when she can watch the boys.
The last texts came from the other student who had the nerve to graduate and move to a different town to work as a nurse after being with us for 2 years. She's going to be back in town this weekend and wanted to know if we'd be around to visit with the boys. Once again, I'm grateful she wants to continue to be a part of their lives.
We kissed our share of toads, but we found 4 princes. Wait, that makes no sense ...
Friday, June 30, 2017
See You Later, Not Goodbye
And we hit the jackpot. We found a nursing student who was comfortable with Teddy's history of seizures (which is why he got the boot from one daycare provider) and his disabilities. She was willing to come to our house to watch the boys, which meant they had a safe, familiar environment. She was agreeable to taking them out into the community to parks, the children's museum, etc.
Throughout the last two years, she's watched Teddy reach milestones we weren't quite sure he would hit. She's encouraged his progress, reported his new accomplishments to me and taken pride in his skills. Teddy's face lights up whenever she enters our house, addressing him as Mister. Teddy routinely tries to leave with her at the end of the day, wanting to continue his fun with her.
She's been one of a handful of people who've successfully watched our boys in the evening and has become familiar with their bedtime routine. She's administered Teddy's anti-seizure medication, monitored his temperature and ensured his safety ... as much as possible because, after all, he is Teddy.
She's played games with AJ. She's endured hundreds of questions from AJ, along with tantrums for saying no to his use of tablets or television. She's played outside with the boys at different parks. She's taken them out to eat (no easy feat by yourself). She's fed their love of ice cream (literally).
She's taken Teddy to the waterpark by herself, lugging him and an tube up the slide multiple times and redirecting him from the deep end of the pool, which is of course his newest fascination. She's recruited another friend to accompany her to the waterpark, so she could take both boys.
She's always been willing to help out when we needed it, whether for me to escape to work or for us to escape using respite. She's been flexible to come early and stay late. She's taken Teddy to his horse therapy appointment an hour away, with AJ in tow. She's taken AJ to gymnastics class with Teddy in tow.
She referred another amazing person to us who became our second childcare provider. Combined, they provided my mom with the support she needed (during finals week of all times) to watch our boys for a week while we were in the Virgin Islands. They made that experience doable for my mom, which means another trip without the boys remains within the realm of possibility.
Yet, she had the audacity to graduate from college, pass her boards, become a RN and accept a pediatric nursing position across the state. I'm so happy to see her pursuing her dreams and know she'll be a terrific nurse for any children she encounters, regardless of their needs.
At the same time, I had a hard time not crying yesterday when she left our house for the last time. She made the day as special as possible for the boys, taking them to AJ's favorite restaurant (Buffalo Wild Wings) for lunch and then to the store to pick out goodbye gifts from her. I can't help but think of the Dr. Seuss quote:
“Don’t cry because it’s over, smile because it happened.”
Now, to brace myself for our other sitter's last day next month ...

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